Friday, July 8, 2011

Cerebral Palsy

Today we had our 5th follow up appointment at the hospital.  I am used to them sort of dodging around things in a way, and my plan was to go in there and ask them straight out when they would make a diagnosis like Cerebral Palsy.  As it turns out, I didn't have to try too hard, and we have received an official diagnosis of Spastic Quadriplegia Cerebral Palsy.

Some Facts about Cerebral Palsy:
Cerebral palsy refers to a group of disorders that affect movement. It is a permanent, but not unchanging, physical disability caused by an injury to the developing brain, usually before birth.
Cerebral palsy may only be mild and cause only a slight disruption to a person’s daily life. It can also be more severe, affecting the whole body and may significantly impact how a person participates in daily activities.
In Australia, there are approximately 33,000 people with cerebral palsy. Worldwide, the incidence of cerebral palsy is 1 in 500 births. For most people with cerebral palsy, the cause is unknown. There is no known cure.
There are three predominant types of cerebral palsy and each are characterised by different movement patterns. Movements can be uncontrolled or unpredictable, muscles can be stiff or tight and in some cases people have shaky movements or tremors.
In addition to their motor disability, people with cerebral palsy may have other associated impairments including epilepsy, and disorders of speech, vision, hearing and /or intellect. 
Most people with cerebral palsy have a normal life expectancy. The damage to the brain that causes cerebral palsy does not progress (get worse) as the person gets older.

Cerebral palsy is classified in two different ways, that is its impact on movement, and the parts of the body affected.  

In our case, the impact on movement is "Spasticity" which refers to the muscles being spastic or having high muscle tone.  The muscles are tighter than they should be, therefore more difficult to move.  Quadriplegia refers to the fact that all four limbs are affected.  (There is also Hemiplegia which is when only the right or left side is affect, or diplegia where either only the arms, or only the legs are affected)   

So back to our appointment...  Virtually the first thing the Doctor said to us was "What have you been told so far in regards to diagnoses and prognosis for the future?" to which I said "Not much, basically everyone just says how well he is doing under the circumstances and are happy that he is continuing to progress, but I was planning to ask you today about when you would make a diagnosis like Cerebral Palsy, because in my opinion that is where we are heading"  He said Ok and proceeded to ask some questions and have a bit of a look at him, just the normal stuff really, and then he said "Yes, today we can say that he does have Cerebral Palsy."  I specifically asked him what type of cerebral palsy because I could never decide if he was quadriplegia or hemiplegia.  The Doctor feels that although his right side is worse than his left, that all of the limbs are affected.  Slight negativity there, in that he said that Children with quadriplegia have a harder time learning to walk than children with hemiplegia, because they have to struggle with two "faulty" legs rather than one.   He also mentioned Joshua's microcephaly and reiterated again that for the  extremely small size of his head, he is really doing very well.  He also said that it is great that he is as mobile as he is already because many children with Cerebral Palsy are not.  He also said that right now it is really impossible to tell how all of this has affected his cognitive function.

He then went on to discuss some of the different things that will need to happen.  First of all, he wants us to apply through the Government for disability/carers payment, as he believes in the future Joshua will need more assistance and the sooner you are in the system, the better.  We have another hospital appointment in three weeks where they will help with the form for that (as the Doctor needs to fill out part of it as "proof" there is an issue).  He also said that Joshua will need to have regular x-rays on his hips, as the tendon tightening associated with Cerebral Palsy can cause the hips to dislocate.  He is also initiating referral into the Carpentaria Disability Service that I have mentioned in the past, which is basically Early Intervention for children that need more help than what we are currently getting at the Children's Development Team.  I am pleased about that because I feel that he was falling through the cracks a bit at the CDT.   He also said that the hospital has a "Rehab Clinic" for people with Cerebral palsy, where they have specialists come up from interstate every few months, and he is getting Joshua into that.  He also wants to see Joshua more frequently, and says that the next 12 to 24 months are really quite critical in terms of getting help for Joshua.  He also agrees with my suspicions that Joshua's right leg is shorter than his left, which I brought up with the Physio at his 10 month assessment, so that will also need monitoring.  So yeah..  basically we are going to start having a lot more appointments and my biggest concern about that is really financial...being able to juggle them all and still be able to work.  I will have to see how it all works out.

So that is it, the verdict is in, and overall I am happy about it because it means that we will be getting access to more services and obviously the more help he gets, the better off he will be.

Oops, Edited to Add:

Joshua's stats at 13 months:

Weight:  9.2kgs
Height: 75cm
Head Circumference: 41.6cm  

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